Thalassemia Patients and Friends

Discussion Forums => Miscellaneous Questions => Topic started by: Emby on February 08, 2014, 12:46:31 PM

Title: Increasing Bone Mass
Post by: Emby on February 08, 2014, 12:46:31 PM
Hello All,

I would like to ask if anyone takes or have taken Alendronic Acid tablets or infusions.
If yes then how long were you on this treatment? Was it effective?
I would also like to know that when Zscore is -2.1, would this mean overall bone mass is low or not overall?
My son might start this treatment so i would like information for this reason.
Thank you so much.

Emby
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on February 08, 2014, 03:31:00 PM
You can see a good explanation of Z score at http://www.niams.nih.gov/Health_Info/Bone/Bone_Health/bone_mass_measure.asp

I have heard from patients who have taken zoledronic acid with success, but be prepared for side effects, as all of the bone drugs do cause side effects.
How often is the med supposed to be administered?
Title: Re: Increasing Bone Mass
Post by: Emby on February 10, 2014, 01:54:37 AM
Hi Andy,

He has not yet started on it, but has been referred to see a doctor for this. The thing is that his reading last year was -2.7 and now -2.4 [opologies for recording wrong result in last post]. so in actual fact, his bone mass is a little better than before and this is just by taking vit d. Also he would be classed as someone with osteopenia and not osteoporosis so maybe the next step from here is not alendronic acid but to maximise vit d levels and review at next scan.
What are the side effects to taking zelondronic acid?

Emby
Title: Re: Increasing Bone Mass
Post by: Canadian_Family on February 10, 2014, 02:31:56 PM
Few points from our experience.

The bone density in Thal Major is expected to be lower because of the condition.
The Z-score of -2.4 is a bit more than normal for thal major. The thal major child with z-score less than -2.0 to -1.0 may not require any medication.
I would be very careful with Alendronic Acid, our doctors tried their best not to go that route.
Not sure if your child is taking enough calcium and vitamin D plus physical activity.
Little Miss A, unfortunately had a Z-score of -3.6 four years ago, with persistent calcium, vitamin D and physical activity she is -1.7 in last checkup.
Title: Re: Increasing Bone Mass
Post by: Emby on February 10, 2014, 03:08:08 PM
Hi Canadian Family,

Thank you for replying. That is great news for your daughter. This is how i feel, that bone mass can be built with the way you have
been handling it. Please can you tell me what the doctors won't say about Alendronic Acid?

Emby
 
 
Title: Re: Increasing Bone Mass
Post by: Canadian_Family on February 10, 2014, 04:37:39 PM
Doctors are usually very open about the side effects of Alendronic Acid, my limited understanding is that these drugs are designed for adult patients over 60 and there is no significant data measuring long term effects on young children.

Please google for more information, this link is helpful as well.

http://www.nos.org.uk/page.aspx?pid=1235



Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on February 10, 2014, 04:46:43 PM
Emby,

Seeing that he has improved by using vitamin D, it would be prudent to continue this strategy and if his levels have not gone up fast enough, higher doses of D would be appropriate.

If you want to be shocked, look up the side effects list of these bone drugs.
Title: Re: Increasing Bone Mass
Post by: Emby on February 11, 2014, 12:53:37 AM
Thank you Canadian Family and Andy,

Looked it up...and yes it is shocking. Am i allowed to post a link to patients response to taking this drug on here?
The patients are mostly older but just think how much more it would effect someone with thal! At any age!
hope to discuss this with his doctor...always research on drugs, should't blindly accept/take what is prescribed.

Emby
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on February 11, 2014, 01:08:59 AM
The doctors are big on these drugs, but the side effects can be horrific (ie. jaw necrosis). I think the drugs and alternatives like high doses of vitamin D along with calcium, magnesium and zinc should be compared before making any decision. The vitamin and mineral approach has no side effects, and should be tried before deciding on bone drugs. I don't think these are routinely given to children, and even adult thals should be cautious and understand what they're getting into before agreeing to the drugs. It's much safer to get the D level above 50 than it is to take bone meds. That should always be tried before resorting to the drugs.
Title: Re: Increasing Bone Mass
Post by: Emby on February 11, 2014, 01:36:12 AM
Thank you Andy,

My sons vit d level is 53 which shows to be just adequate , so should't he aim for a higher level?
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on February 11, 2014, 02:14:25 AM
I'm not sure if it's the same units of measurement, but 50-80 is considered optimum, so he can still go higher. Exercise is also important for bone strength.
Title: Re: Increasing Bone Mass
Post by: Emby on February 11, 2014, 04:18:07 AM
Thank you Andy...yes it is the same measurement.
Title: Re: Increasing Bone Mass
Post by: Sharmin on February 13, 2014, 10:47:27 PM
Andy,

Might it be possible that because children with thal major usually have a drastically lower bone age (average 4 years behind) that the z- scores being measured for a certain age may be inaccurate?  I am not sure if bone age is relevant - just guessing.

Sharmin
Title: Re: Increasing Bone Mass
Post by: Emby on February 14, 2014, 01:40:24 PM
Hi Sharmin,

I guess it is just a guideline. Even in normal people, food consumed is not 'wholesome' anymore and we are beginning to see the effect
of this everywhere so normal bodies are not so normal anymore. Although we know for Thal bone mass is decreased, it is not the age to look at but to get bone mass to increase to the best level possible for them.
Sorry if I have misunderstood your question.

Emby
Title: Re: Increasing Bone Mass
Post by: Pratik on February 16, 2014, 07:11:19 AM
Hi Andy,

Is Risophos (Indian Brand) containing Risedronate 35mg/week is the same as the other med you were talking about? If so, I suffered very bad osteoporosis in 2009 as you know and still a little (not completely healed but no pains now) and took 35mg/week for 3 years till 2012 end.

I am not sure if it has affected me but I had no side effects like jaw necrosis but just sometimes (which usually was starting on it again in case I took a 2-3 weeks break) was a little back and joint pains.

Now I do not take it.

I am just on Vit D + Cal + Mag but however, till this date, I am not completely healed. I do not have the same leg power that I used to have before having osteoporosis. Kinda feels sad remembering good old times but yes, I do not have any pains now. Just that they are not as powerful as they were ones. That means can't run longer distances without causing hip joints a little pain and distress.

Best,

-P.
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on February 16, 2014, 08:53:46 PM
Pratik,

Yes, that is from the same family of  bisphosphonate drugs.

Your hormones also have a big role in bone strength, so once again, keeping iron low helps.
Title: Re: Increasing Bone Mass
Post by: Emby on February 18, 2014, 11:42:47 PM
Hello Andy,

What is your opinion on taking Calcium Sandoz. Both of my sons have been on this in the past?
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on February 21, 2014, 01:02:53 AM
Emby,

Can you post the ingredients? Apparently, Novartis has two completely different preparations with the same name.
Title: Re: Increasing Bone Mass
Post by: Emby on February 23, 2014, 01:52:17 AM
I'm sorry Andy. I don't have the ingredients as the boys were on it a good few years back. The preparation was a liquid in a big brown bottle.
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on February 23, 2014, 05:06:50 PM
I have mixed feelings about this preparation. It is a favorite of doctors, but it includes dyes and artificial sweeteners, both of which are inappropriate in medications, although it is difficult to get the medical profession to pay attention to this. I prefer a well thought out formula like Osteocare, which also contains the trace minerals that are necessary for bone growth.
http://www.amazon.com/Osteocare-Vitabiotics-Original-90-Tablets/dp/B000LNCB4O
Title: Re: Increasing Bone Mass
Post by: Emby on February 24, 2014, 01:56:37 AM
Thanks Andy

Pharmaceutical slogan should be ''We will get rid of your sickness but it's in our best interest to give you another''
Title: Re: Increasing Bone Mass
Post by: Emby on March 01, 2014, 07:41:19 PM
Hello Andy, I have been researching on meds/vitamins that help increase bone mass. can I please ask your opinion about Alfacalcidol (One-Alpha) and Calcitrol (Rocaltrol). Are these safe to take?
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on March 02, 2014, 06:10:48 PM
Both are widely prescribed by doctors to treat vitamin D deficiency or to increase absorption of calcium and both are considered safe.
Title: Re: Increasing Bone Mass
Post by: Emby on March 03, 2014, 02:19:20 PM
Thank you Andy.

I have read that these meds increase absorption more effectively of calcium and phosphate through the intestines. Perhaps the boys calcium is being absorbed from the bones making the bone mass decrease. The urine does not show anything negative with calcium.  So, would these meds stop absorption of calcium from the bones? Their calcium range is normal, would taking more calcium be harmful?

As I mentioned before, my older son is not on bisphosphonates but has only been suggested to him and to the bone specialist whom he is still to meet. I'm not keen on this at all...he does not want to take that route either. The other thing may be cinacalcet. Is that a better treatment? My understanding is that it is meds like calcitrol and one-alpha.
Title: Re: Increasing Bone Mass
Post by: Pratik on March 04, 2014, 10:53:49 AM
Rocaltrol is Vitamin D itself. I took it for some 3 and a half years till in Feb 2013 where I started ordering it from Puritan instead and have never switched back!

Rocaltrol is also costly and is not a value for money, instead Vitamin D 5000 IU would be far better from Puritan at a much lessor cost and bigger quantity.

-P.
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on March 04, 2014, 04:05:44 PM
Cinacalcet lowers blood calcium. I'm not sure why that would be suggested.

I find the problem with doctors prescribing Rocaltrol is that the dosing is not sufficient, and as Pratik mentioned, it's a costly way to get D. High doses of D3 can be found rather cheaply and they are quite effective. For teenage boys, I would suggest 5000 IU D taken with at least 1000 mg calcium and 500 mg magnesium. 25-50 mg zinc should also be taken daily, and a good quality product like Osteocare with trace minerals should also be taken.
Title: Re: Increasing Bone Mass
Post by: Emby on March 04, 2014, 08:55:05 PM
Thank you Pratik and Andy,

Although all bloods check out as normal with calcium and phosphate for my sons, the consultant think there could be a case of probable hypoparathyroidism for the younger one. Bit confused.The only thing is that the PTH level was a bit low. But when I asked the Endocrinologist seeing my older son, I was told low PTH levels does not mean there is a case of hypoparathyriodism when other bloods are normal. Sorry if I'm confusing you. I'm checking up on both hypo and hyper to see what treatment is recommended and the diagnosis of it. And also trying to stay away from bisphosphonates which has been suggested for my older son...   
Title: Re: Increasing Bone Mass
Post by: Emby on March 04, 2014, 09:32:04 PM
Canadian Family, if you don't mind me asking, can you please tell me how much calcium and vitamin D is your little girl on?

Here the doctor thinks vit d at 54 is very good for thals but I disagree as that level is just considered as adequate. They don't recommend calcium at all when blood levels are normal.
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on March 05, 2014, 05:28:11 PM
Emby,

Please look at this study. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994558/

Quote
...supplemented with vitamin D (60,000 IU for 10d) and calcium (1500 mg/day for 3 months)...
The results thus suggest that patients with thalassemia have hypoparathyroidism and reduced serum calcium concentrations that in turn were improved with vitamin D and calcium supplementation.
Supplementation of vitamin D and calcium to the patients of the present study resulted in normocalcemia, however, they still had reduced levels of serum PTH. It could be due to the reason that supplementations received by these patients might not be sufficient and should have been continued for a longer duration. 
Title: Re: Increasing Bone Mass
Post by: Canadian_Family on March 05, 2014, 08:54:27 PM
Hi Emby,

Little Miss A has been taking one tablet of 500mg calcium with 1000IU of vitamin D, three cups of milk, yogurt cup and a cheese (all daily) for the last three years.

Now, I read the responses above, here is what our experience has been so far. Any tablets (sandoz etc.) mentioned here have limited capacity to be absorbed in the body. These tablets are usually made from calcium carbonate (the molecule is bigger) and hard to absorb in the body. For example if somebody is taking 500mg of calcium carbonate tablet daily, does not mean the body absorb 500mg. The absorption rate is anywhere from 50-60%. Yes you heard it correct !!!!

The nature has provided calcium in food (best for absorption), to complment the tablet, one has to take dairy, or other source of calcium and lots of it on a daily basis. Excersie daily for bone mass is also must. Rope skipping has been proven to increase the bone mass. All these for longer period of time and you should get good results.

Hope this helps.....
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on March 05, 2014, 09:04:46 PM
One note to add to Canadian Family's post.
Calcium is poorly absorbed, but it is much better absorbed if the vitamin D level is normal. If the D level is normal, about 30% of the calcium can be absorbed. If deficient in D, only about 10% is absorbed.
Title: Re: Increasing Bone Mass
Post by: Emby on March 07, 2014, 02:40:41 AM
Okay, thank you very much Andy and Canadian Family.

Also found this while researching. Which type of magnesium is best?

Osteoporosis

Magnesium is involved in bone formation and influences the activities of osteoblasts and osteoclasts [48]. Magnesium also affects the concentrations of both parathyroid hormone and the active form of vitamin D, which are major regulators of bone homeostasis. Several population-based studies have found positive associations between magnesium intake and bone mineral density in both men and women [49]. Other research has found that women with osteoporosis have lower serum magnesium levels than women with osteopenia and those who do not have osteoporosis or osteopenia [50]. These and other findings indicate that magnesium deficiency might be a risk factor for osteoporosis [48].
Although limited in number, studies suggest that increasing magnesium intakes from food or supplements might increase bone mineral density in postmenopausal and elderly women [1]. For example, one short-term study found that 290 mg/day elemental magnesium (as magnesium citrate) for 30 days in 20 postmenopausal women with osteoporosis suppressed bone turnover compared with placebo, suggesting that bone loss decreased [51].
Diets that provide recommended levels of magnesium enhance bone health, but further research is needed to elucidate the role of magnesium in the prevention and management of osteoporosis.

Andy, do you have something on bone health for thals that i could print to show the consultant. The consultant doesn't seem to think that supplementation of vit d, magnesium, calcium and zinc is important, that these should taken mostly by diet.
Title: Re: Increasing Bone Mass
Post by: Himanshu Kumar on March 08, 2014, 08:59:13 AM
Can rickets set in at a very early age in thal major. My pediatrician has asked for bone xray of my daughter who is a thal major and just 2.5 yr old. I have been giving shelcal to my daughter for over an year now. I am alzo giving her z  and d now. What are the early symptoms of rickets.
Regards
Title: Re: Increasing Bone Mass
Post by: Emby on September 21, 2018, 11:45:51 AM
Hello everyone!

it's been a while.

has anyone heard of a bone supplement called Bone UP....to increase bone density..

Amounts Per Serving
Vitamin C (as calcium ascorbate): 200 mg
Vitamin D3 (cholecalciferol): 25 mcg
Natural MK-7 (vitamin K2 as menaquinone-7): 45 mcg
Calcium (elemental) (from microcrystalline hydroxyapatite): 1000 mg
Magnesium (as magnesium oxide): 500 mg
Zinc (L-OptiZinc®) (as zinc monomethionine): 10 mg
Copper (as copper gluconate): 1 mg
Manganese (as manganese citrate): 1 mg
Potassium (as potassium citrate): 99 mg
Boron (as boron citrate): 3 mg


does anyone take this? Has it helped?
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on September 30, 2018, 06:51:59 PM
Hi Emby,

I don't know anyone who has taken this product, but it is a well balanced formula from a company with a long positive track record for making quality supplements. Reviews on Amazon are overwhelmingly positive, with many claiming improvement in bone density after taking it for long periods.
Title: Re: Increasing Bone Mass
Post by: Emby on October 01, 2018, 08:25:48 PM
Andy, thank you very much for replying.
I hope that you are well.
Looks like worth it is trying.
Title: Re: Increasing Bone Mass
Post by: Andy Battaglia on October 06, 2018, 05:36:33 PM
I'm doing better, although it appears I may have to deal with the effects of cellulitis for a long time. Dr Wheatgrass Super Balm is keeping it under control on my skin.
Title: Re: Increasing Bone Mass
Post by: Emby on October 09, 2018, 12:57:05 PM
Oh gosh that is painful. I pray the Allah grant you a cure you and grant you ease and comfort in your body. Aameen. :heartpink